New Article Out Of Vandy, Ddavp As A Possible Treatment For Pots

[sue1234]

http://www.ncbi.nlm.nih.gov/pubmed/22561596

It is only the abstract, but if someone has access to the full article, I'd love to have it. I'd be curious if their ADH was low to begin with, and what those levels were.

[issie]

Thanks Sue for the link. I have heard of some with HyperPOTS being helped with this. Will be interesting to see what their further studies indicate about the med for this.

Issie

[sue1234]

Yea, Issie, that's what I am real curious about---if this helps because these peoples levels were low to begin with, or if it helped them despite normal ADH levels. If it helps in general despite their levels, then that may be a good option for alot of us. My last endo haphazardly prescribed vasopressin(desmo?) for me, but didn't mention follow-up labs to test for electrolytes, so I was afraid of not being monitored. With my new endo, I may bring up this route again.

[issie]

Let us know what you figure out. Could be an option for me too.

Issie

[HopeSprings]

I was complaining to a neurologist about my night time frequent urination problem and he said, if you want that to stop, take this - (DDVAP). My adh levels are normal. I tried it a few times, had some side effect (forget what), got scared and stopped. This med causes you to hold onto fluid I guess, but in a different way than florinef? So I wonder if it helps because of blood volume? I know of at least one POTS person (from years ago on another site I think) who found relief with this medication. That neuro also didn't warn me about electrolytes. This is one I would definitely give another try with the right Doctor. I'd be very interested in seeing the full artice as well if anyone has access.

[issie]

Yeah, that's what it does. It works on vasopressin levels - a different thing that causes fluid retention. I think Firewatcher is on it and it has worked great for her. Maybe she will chim in here. You have to be careful how much you drink with it. In fact, you have to limit how much you drink. It works on diabetes insipidus.

Issie

[bellgirl]

Issie, you just mentioned diabetes insipidus, which is what I thought of when I first saw this post. I used to give it to children with this disorder. It is interesting to note the causes of it...here is a link from Mayo.

http://www.mayoclinic.com/health/diabetes-insipidus/DS00799/DSECTION=symptoms

[firewatcher]

DDAVP is often given to children for bedwetting. The rationale behind the safety of doing this is that they won't drink anything once in bed, and it will allow the kidneys to retain water/concentrate urine until morning when that water is shed/dumped. DDAVP has several issues, mostly dealing with electrolyte issues due to over-drinking while the drug is active (hyponatremia) since desmopressin causes the kidney to retain water only and not sodium.

I take dDAVP twice a day with a "dumping" period for several hours in the afternoon, this preserves and readjusts my electrolyte balance. I can lose up to 6 lbs of water during this time. The only negative effects that I had were when I first started taking it and was used to fluid loading. I've been on it since 2008 without bad side effects, at first I would have calf cramps and other electrolyte related issues until I "got the feel" for when to drink. I have been tested (correctly) several times for ADH levels and mine are not detectible, but the test is notoriously innaccurate; it is not a test that just any lab can do.

If you take this drug, you need to be monitored closely by a doctor until you get an accurate measure of how much you can drink and what goes on in your body. I had blood-work done twice a day for several days over several weeks to make sure that my serum sodium levels were OK.

[Birdlady]

I used to take dDAVP even before I knew I had POTS. I guess I've done things very backwards compared to most people. LOL When I got my first TTT, I was on dDAVP and florinef already. Neither of those drugs did much of anything for what I now know was POTS. With DDAVP I was constantly paranoid about my fluid intake while on it too. As Firewatcher and Issie said, you have to be mindful of your fluid intake. If you are used to fluid loading or drinking all the time, you could very well send yourself to the ER with hyponatremia.

It's one of those drugs where you absolutely have to be monitored by a doctor. The benefits did not outweight the risks for me, so I stopped taking it.

I'd assume those with hypovolemia from dehydration would see the most benefit on it as long as sodium levels were maintained.

[L4UR3N]

I am SOOOOO happy for this article!!!!!! It seems like such common sense yet it has taken them all these years to actually do a study on this, lol. I have long wanted to try this drug, yet no doc would prescribe it to me given my hypertension. Ive never had the water deprevation test for DI, but have seen 2 endocrinologists who played around with the idea since I pee out 6 liters/day. They both decided against testing me for it because I could hold my urine at night. Given the dramatic improvment that I get from a saline infusion, I can only assume that this drug would be extremely beneficial to me.

Thank you SO much for posting this. Best research Ive seen in quite a while....

[partyhat]

DDAVP has been amazing for me... I had pretty severe hypovolemia and was dependent on IV fluids, and while DDAVP certainly doesn't work as well as an IV, it works well enough that I've been able to completely stop the IVs-- eliminating the huge risk of a central line.

[jem15]

Darn, I just tried DDVAP and couldn't tolerate it. I'm also sad about this cause for the short time I was on it, it seemed to be starting to help with the nightime peeing. I tried it for a week, and towards the end of the week, got extremely fatigued, where i felt like I couldn't even sit up. Then I stopped it for a week, to see if it was the med or not, and then went back on for two days.. the 1st day, intense fatigue came back, and the 2nd day I had a super bad vertigo episode that lasted for hours! I haaate that symptom cause not only is it incapitating during it, but then afterwards for days/sometimes weeks after, I'll have an increased sense of dizziness.. so I'm still not right yet.

Anyway, my doc obviously said to stop the med. I've tried so many things and nothing works, so frustrating! I always get excited when a new article comes out on a treatment, but then so sad when it's something that didnt work for me and/or I couldnt tolerate:-( Ah well, good to know about anyway, thanks for posting.

Only thing left for me to try is a combo of low dose mestinon/mido.. I've tried them individually with no success, but doctors tell me sometimes trying them together helps?? We'll see...